Continuing our special series on perinatal bereavement and palliative care with examples of initiatives from Ireland and France that aim to improve care for babies and families. Today, Nicole Monteville Culas, President of The Child Without Name – Parents in Grief (ESNPE), in France, explains how they are using social media to support bereaved parents and raise awareness of perinatal bereavement.

Nicole Monroeville Culas, President of The Child Without Name – Parents in Grief (ESNPE)

ESNPE (L’Enfant Sans Nom – Parents Endeuillés in French), meaning ‘The Child Without Name ­– Parents in Grief’ is an association that helps families to cope with perinatal grief. Founded in 2000, its purpose is to support bereaved parents and to help them confront this particular grief by offering support groups in which they can exchange their experiences with our trained volunteers. ESNPE also aims to raise public awareness of perinatal bereavement, which is still poorly understood and often taboo.

Since 2000, ESNPE has offered a website for parents to find out information about perinatal bereavement and their legal rights and obligations in France. There is also news of our activities, such as meetings, conferences and creative workshops, and that of other French associations with whom we try to create a network on the website. An online forum is also available for parents. (See link below).

The rapid development of social networks such as Facebook and Twitter has marked a turning point in the way we communicate. Today, parents affected by this type of grief make use of these ways of communicating in all areas in their daily lives. Therefore, our presence online has become necessary in order to reach as many parents as we can and to guide them to associations that can best support them.

Our Facebook page, opened in 2013, shares the same purpose as our website: To inform our parents of activities about perinatal bereavement in France. It’s also a perfect place to share press releases and videos. Information is accessible to anyone, including those who are not affected by bereavement, and so they too will discover what perinatal bereavement really is. Thus, social networks enable us not only to be there for our parents but also to raise public attention.

“This page allows us to freely remember our precious little ones, to talk about them and to share stories and memories. As bereaved parents, we feel very close to each other because no one else can really understand, it’s a very special bond and we can trust each other. This will also allow me to help and guide people who might, unfortunately, go through this, so that they are not alone, but really supported and listened to.” Abou.

A flower, a lifeOur association is also the co-founder and collective member of ‘Une fleur, une vie’ (‘A flower, a life’) that links many groups together. In May, it organises a day of awareness of perinatal bereavement, which is an occasion for parents to honour their baby who ‘left too early’. In 2013, for the launch of this special day, a Facebook page was successfully created providing information for parents. This major event, held annually in Paris, is something that grieving parents look forward to, thanks largely to communication through this page. (See link below).

However, we are cautious about potential abuse; we are very vigilant to ensure that parents who follow us will not be approached, through us, by malicious people who may take advantage of their vulnerability and exploit them.

While social networking has its limits when used to support bereaving parents, it is an essential platform for communication today.